VOL. 18 – NO.3
Exciting New Zealand Pig Cell Research is Encouraging! There has been a buzz of excitement around New Zealand and overseas since the release of of the most recent phase of breakthrough cell transplant research carried out by New Zealand Biotechnological Company, Living Cell Technologies (LCT). The research is led by Auckland based neurologist Dr Barry Snow . Dr Snow presented the results of the NTCELL trial at the 19th International Congress of Parkinson’s Disease in San Diego on Wednesday 17 June 2015. The open-label Phase I/IIa clinical study evaluated the safety and clinical effects of implantation of NTCELL, which contains specialised brain cells that produce cerebrospinal fluid (CSF) and neuroactive growth factors. (see our fact sheet on ‘Taking part in clinical trials’ on the Parkinson’s New Zealand website). The first phase of the study transplanted tiny ‘jelly bean’ capsules containing cells from Auckland Island pigs into the brains of four people with well-established Parkinson’s and who were no longer responding to traditional therapy. The patients were aged 59 to 68 years. NTCELL was injected under guidance by neuroimaging into the affected area of the brain where neural activity was substantially diminished or degenerated. No immunosuppressive drugs were used. The primary endpoint of this study was to demonstrate the safety of NTCELL implantation. This endpoint was met, showing NTCELL implantation was well tolerated, with an additional result of symptom management. NTCELL implantation also improved clinical features of Parkinson’s in the four patients studied. All four patients experienced sustained improvement in clinical features at week 26 post-implant. The first patient treated continued to show improvement in neurological scores at 74 weeks post-implantation.
“Our ultimate goal is to discover a therapy that could regenerate lost dopamine cells,” says Dr Snow. The next stage will be to test this therapy on a larger scale. Ken Taylor, Ph.D., Chief Executive Officer of LCT, said, “While this regulatory-enabling study is small in scale, the results are sufficiently encouraging to warrant further studies. We are advancing the clinical development of NTCELL and will use the results of this study to design a larger study to evaluate its potential as a disease-modifying treatment for patients with Parkinson’s.” LCT plans to initiate the Phase IIb study in the fourth quarter of 2015. The study will be led by Dr. Snow at Auckland City Hospital. Parkinson’s New Zealand is very pleased about the continuation of this study and look forward to keeping member’s updated on its progress.
Websites See our previous article on cell research (December 2012 Parkinsonian) www.parkinsons.org.nz/publications Keep up to date with Living Cell Technology www.lctglobal.com
Dr. Snow told The Parkinsonian that ”The positive clinical response observed in this small study of four patients is encouraging and I look forward to evaluating efficacy in a larger study.” “Currently, clinicians are able to manage only symptoms in patients with Parkinson’s disease as there are no diseasemodifying treatments available that can reverse the underlying progressive degeneration of neurons in the brain,” said Dr. Snow. The medication available for Parkinson’s currently is focussed on helping reduce symptoms. This treatment aims to slow or stop the loss of dopamine by transplanting cells that release growth factors.
MRI SHOWING IMPLANTED NTCELL MICROCAPSULES CAN BE SEEN DISTRIBUTED THROUGH THE PUTAMEN AT THE END OF THE CANNULA TRACT
Parkinson’s Community Educator Annual Conference 2015 This year 31 Parkinson’s Community Educators gathered in Wellington from around New Zealand for a three day conference to listen and learn from 11 speakers. Each day the sessions ranging from the science of Optogentics to the introduction of medication known as Apomine kept the attention of everyone in the room. Other speakers inspired and informed with dance, pharmacology, advance care planning and non-motor symptoms. The high level of professionalism of our Community Educators was certainly evident in the room and acknowledged by the speakers, with twenty nine of our Parkinson’s Community Educators now holding a professional health registration. The highlight for many of our Parkinson’s Community Educators was the opportunity to produce their own poster on a topic of their choice to present to the group. This session was the individual work of the Community Educators and many came
PARKINSON’S COMMUNITY EDUCATOR’S AT THIS YEAR’S CONFERENCE
ready for the challenge, while others rose to the challenge on the day. Everyone voted on the top three ideas. Mary Lythe, Auckland Branch hit the nail on the head with Coping with Cognitive Changes in Parkinson’s, Glennis Best, Bay of Plenty Division reminded us about the impact on carers with Chronic Sorrow and Lynn Maclachlan, Kapiti/Horowhenua Divsion refreshed our knowledge as we see an increase in numbers of people with Progressive Supranulear Palsy.
WPC Countdown to Portland 2016 2 DILYS PARKER, NZ’S FIRST AMBASSADOR FOR THE WPC
More than 3,500 people from 65 countries will attend the World Parkinson Congress (WPC) 2016 in Portland, Oregon. The WPC is a fantastic opportunity to learn about the latest advances in science, clinical research and comprehensive care from top health professionals and researchers and people who are living with Parkinson’s (PwP).
The WPC is held every three years and Parkinson’s New Zealand has been a founding partner since the first WPC in 2002 and our Chief Executive, Deirdre O’Sullivan sits on two of the organising committees. Ambassadors are official representatives and act as an extension of the WPC and their work is around promoting the WPC 2016. There are 12 World Ambassadors. All have Parkinson’s and work for WPC voluntarily. Parkinson’s New Zealand Board member Dilys Parker is New Zealand’s first ambassador for the WPC. “I believe passionately in the World Congress and in the work of the Coalition. I support the WPC philosophy of all members of the Parkinson’s community being equal and valued as we
work to improve treatment and care in Parkinson’s and hopefully one day a cure. I am also keen to see an increased collaboration between Australian and New Zealand people with Parkinson’s and more awareness of the place of Southern Hemisphere countries within the wider Parkinson’s Community.” WPC have an “Ask the Ambassador” program that Dilys has participated in and they also have a Podcast series leading up to Portland. The 15 podcasts will not only address common questions asked by PwP, but will also serve as a primer on the biomedical research currently underway. Further information about WPC, Portland 2016, Dilys and the podcast series can be found on our website www.parkinsons.org.nz. If you have any questions about the WPC event email firstname.lastname@example.org.
PARKINSON’S NEW ZEALAND | PO Box 11-067, Manners St, Wellington 6142 Phone 04 472 2796 | Freephone 0800 473 4636 (0800 4PD INFO) | Fax 04 472 2162 Email email@example.com | Web www.parkinsons.org.nz @Parkinsonsnz www.facebook.com/parkinsonsnz & Twitter Follow us on Facebook
A WORD FROM THE ACTING CHIEF EXECUTIVE
Tena Koutou Katoa It is with extreme excitement we share Dr Barry Snow’s research in this edition of the Parkinsonian. We first had the opportunity to give everyone a heads up in our December 2012 Parkinsonian and less than three years on we are again sharing the initial positive results of the first phase of trials. For many these results hold hope for future treatment options. It is fantastic that this ground breaking work is being done in New Zealand and we greatly value the friendship and support Dr. Snow has always shown for Parkinson’s New Zealand. These last few months have been full of education. Firstly with the attendance of five staff from around the country at the Parkinson’s Australia Conference held in Adelaide. Then at our own Parkinson’s Community Educator Conference held in Wellington. It was a great catch up time for the Community Educators at this once a year event; chatter, laughter and general camaraderie filled the room reminding me that passion connects us together. Where would we be without our carers? Our Carers Corner piece that showcases two Careers Guides, other resources for carers and funding is a must to check out. Find out what carers are eligible for.
Finally, our Connecting People, Changing Lives theme for Parkinson’s Awareness Week reminds us of the importance of our connections and the impact these have on the life of a person with Parkinson’s and their families. Raising awareness and money is a very important part of what we do at Parkinson’s New Zealand. I look forward to our street appeal in November where I always love to hear stories about how Parkinson’s New Zealand has made a difference in someone’s life. I trust wherever you are in New Zealand you will also be taking up the challenge to help. Nga mihi nui
Stephanie Clare ACTING CHIEF EXECUTIVE AND CLINICAL LEADER
ASK THE CLINICAL LEADER
Q: I HAVE HEARD ABOUT DR. SNOW’S EXCITING RESEARCH WITH LIVING CELL TECHNOLOGIES LIMITED (LCT). HOW CAN I GET ON ANY FUTURE TRIALS? A: I agree, Dr Barry Snow’s research is exciting and an opportunity not to be missed. Dr Snow has yet to confirm the start of the second phase but he has told me that he is working with his team now to design the next trials. The process of research is that small numbers of patients are studied first, and there are usually very strict criteria.
As the understanding of the treatment improves, the numbers increase. It is likely that the next group of patients will come from the northern region, and Dr Snow will let the neurologists know who will be eligible. Keep in touch with your neurologist.
Please do not interpret anything in this magazine as medical advice. Always check with your doctor. The appearance of any article or other material in this publication does not imply the agreement of Parkinson’s New Zealand with the opinions expressed therein.
NEWS & RESEARCH DEPRESSION AND PARKINSON’S A new study published in June in the journal Neurology suggests depression is associated with an increased risk for Parkinson’s, and the more severe the depression, the higher the risk. The lead author of the study, Peter Nordstrom, a professor of geriatrics at Umea University in Sweden, said “The effect is small and detectable only in a large population, and that most people with depression will never get Parkinson’s. It is not known whether depression is a risk factor for Parkinson’s or an early symptom of the condition.” Swedish researchers looked at over 140,000 people with depression for an average of seven years, and in some cases as long as 25 years. They compared them to a group of people without depression, and found their risk of developing Parkinson’s was three times higher than the people without depression. Among the people with depression, those who were hospitalised and those whose depression was recurrent were at higher risk, suggesting that the more severe the depression the greater the risk. One theory is that depression can damage the brain in a way that might increase the risk of Parkinson’s. A second theory is that early in Parkinson’s people are more prone to depression. Whatever the cause, this study adds to the growing evidence that depression can be one of the very early symptoms that can occur before a tremor or movement problems. 4
parkinsons.org.uk | well.blogs.nytimes.com
FURTHER EVIDENCE THAT PARKINSON’S STARTS IN THE GUT A new study carried out by researchers from Aarhus University in Denmark and published in July in the scientific journal the Annals of Neurology adds important evidence to the theory that Parkinson’s may start in the gut and spread upwards through the nervous system to the brain. The Danish research team studied the medical records of 15,000 patients who had a procedure to sever the vagus nerve in their stomach to see how many people who had this procedure went on to develop Parkinson’s. The vagus nerve is the main pathway of communication between the gut and the brain. Up until the mid-90s, this procedure was a very common method of ulcer treatment. The researchers found that in the group that had their entire vagus nerve severed, fewer people reported developing Parkinson’s. Interestingly, people who only had a small part of the vagus nerve severed did not have lower Parkinson’s rates. Many people with Parkinson’s experience problems with their digestion—such as constipation—and these problems can occur many years before the movement symptoms of Parkinson’s emerge. For more information about Parkinson’s and the gut see the December 2014 issue of The Parkinsonian. parkinsons.org.uk
DIABETES DRUGS MAY PROTECT AGAINST PARKINSON’S Testing a drug approved for one condition for its effect on another can be an efficient and effective way to find new treatments. In recent years Parkinson’s researchers have looked to diabetes drugs because of their action on pathways also believed to be involved in Parkinson’s. According to new research published in July in the Journal PLOS (Public Library of Science) Medicine, medicines from a family of drugs called glitazones used to treat diabetes may protect against Parkinson’s. Researchers analysed data in more than 160,000 individuals with diabetes in the U.K. The study, which looked at the medical records of people from 1999 to 2003, compared those who had taken glitazones with those who had taken other diabetes drugs. The researchers found that people with diabetes who had taken glitazones had a 28% lower chance of developing Parkinson’s than those who had used other diabetes drugs. The researchers also discovered the protective effect of glitazones was only seen in people with diabetes who were still taking this type of drug. People with diabetes who had previously taken this type of drug but had stopped or switched to another type of medication were no longer protected.
BREAKTHROUGH ALLOWS PARKINSON’S PROGRESSION TO BE MEASURED University of Florida (UF) researchers have identified a biomarker that shows the progression of Parkinson’s in the brain, opening a door to better diagnosis and treatment of the condition. The researchers found that an area of the brain called the substantia nigra has more “free water”, or fluid unconstrained by brain tissue, in people with Parkinson’s. The study published in May in the journal Brain uses a type of MRI called diffusion imaging to show that free-water levels increase as Parkinson’s progresses. The free-water level was also a good predictor of how bradykinesia—the slowness of movement common to Parkinson’s—advanced over the course of the subsequent year. David Vaillancourt, an applied physiology and kinesiology professor at UF and one of the study’s authors, commented “We’ve provided a tool to test promising new therapies that could address progression [of Parkinson’s].” news-medical.net
These results do not suggest that people with Parkinson’s take this diabetes drug directly. Rather, it is hoped the findings will lead to further Parkinson’s research. journals.plos.org THE PARKINSONIAN
FDA APPROVES NEW DBS DEVICE The U.S. Food and Drug Administration (FDA) announced in June that it had approved another deep brain stimulation (DBS) device for the treatment of Parkinson’s and essential tremor. In DBS, neurosurgeons implant a device that delivers electrical signals to a precise area of the brain. In most Parkinson’s patients who receive the treatment, symptoms of slow movement, tremor and rigidity rapidly diminish after the device is activated. The Brio Neurostimulation System from St. Jude Medical delivers electricity in a constant current system. The Brio’s constant current system delivers impulses regardless of brain changes and may reduce the number of reprogramming visits patients will require. Traditional constant voltage devices can react to brain changes over time. While constant current and constant voltage devices are already available from Medtronic many have welcomed the announcement. Dr Michael Okun the National Medical Director for the National Parkinson Foundation in the USA says “The Brio System’s approval is good news for the Parkinson’s patient community because the availability of another device and another company in the market will stimulate more rapid development of DBS technology
COULD THIS HEAD GEAR HELP TREAT PARKINSON’S? A device developed by a group of biomedical engineering graduate students may help relieve Parkinson’s symptoms. The Tremtex team from John Hopkins University developed a headband that may help stimulate the brain non-invasively. After having the idea to develop a device to help stimulate the brain, the team was referred to Yousef Salimpour, a Johns Hopkins postdoctoral research associate who has been studying a non-invasive Parkinson’s therapy called transcranial direct current stimulation. In this painless treatment, low-level current is passed through two electrodes placed on the head to excite or inhibit nerve cells in specific areas of the brain. The device which the team called STIMBand is being considered as a possible home treatment for Parkinson’s. It is a batterypowered design which can be easily slipped on and controlled with a large button. With patient safety in mind, the students designed their prototype to deliver current for only 20 minutes daily and only at a doctor-prescribed level.
For more about DBS see the May 2015 issue of The Parkinsonian.
While the device is still in prototype form, it has already received awards including second place at the VentureWell’s BMEIdea national design contest where it also got a prize of US$5,000. The STIMBand is still required to undergo more testing before it can be used for people with Parkinson’s.
news-medical.net | nwpf.org
ANTI-MALARIAL DRUGS MAY SHOW PROMISE FOR PARKINSON’S A study, published in the journal PNAS (Proceedings of the National Academy of Sciences) in July, show that two antimalarial drugs—chloroquine and amodiaquine—could reduce Parkinson’s-like symptoms in rats. The drugs work by targeting a protein called Nurr1, which is important in inflammation. There is growing evidence that inflammation may be involved in the death of nerve cells in Parkinson’s, particularly in the early stages of the condition. Drugs that block inflammation may be able to slow or halt the progression of the condition. The Nurr1 protein was previously identified as a potential target for treating Parkinson’s, but no drugs for Nurr1 had been found. The researchers tested around 1,000 drugs that are used to treat other conditions to see if they could find any that bind to Nurr1. They then investigated if the drugs had potential for treating Parkinson’s. This research is at an early stage and more research is needed before it is known if these effects may also be seen in people with Parkinson’s. As with any medication, anti-malarial drugs have side effects, some of which are serious. It is important that people don’t start taking these drugs for Parkinson’s. For more about inflammation see the October 2014 issue of The Parkinsonian. parkinsons.org.uk SEPTEMBER 2015
NATIONAL CONFERENCE 2015
In This Together - Parkinson’s Australia Five Parkinson’s staff from New Zealand attended this year’s National Australian Conference in Adelaide from 27-29 May. We asked each of them to tell us about one of their highlights.
STEPHANIE CLARE Clinical Leader Parkinson’s New Zealand The aim of Dr Robyn Lamant of the Asia-Pacific Centre for Neuromodulation, Centre for Clinical Research, University of Queensland and her research team was to find out if a specific dance for Parkinson’s programme would be beneficial for balance and gait for Australians with living with Parkinson’s. Together with the support of the Queensland Ballet Dance Studios, Dr Lamant chose 12 people with Parkinson’s to participate in 30 “Dance for Parkinson’s” classes. Each class ran for 75 minutes and included structured exercise and movement, followed by afternoon tea. What they discovered was dance did benefit walking and balance.
“The recent New Zealand Parkinson’s Community Educator Conference was the perfect opportunity for me to share the positive dance message. At conference our Community Educators experienced a session on dance and music which had them dancing in their seats. Spreading the dance message will be continued throughout New Zealand. Watch out for ‘Dance for Parkinson’s’ popping up in your area” said Stephanie.
BRONWYN ALEXANDER Parkinson’s Community Educator, Canterbury Peer support groups are an effective form of support for people living with Parkinson’s. Breana Wotherspoon of Parkinson’s Victoria’s research reinforces this message. She found that overall the support had a positive effect on physical and psychological health. She also found it can supplement care and therapy provided by health professionals. While a physiotherapist tells you to walk, a peer in a support group will be there right beside you. Other benefits include sharing of experiences, offering of knowledge already discovered and emotional support when things get hard. A support group can raise awareness and tap into local connections. This activity focused approach makes sure everyone looks around at the world they live in and not only at their Parkinson’s. If you are not part of a support group, ask your Parkinson’s Community Educator about one today.
SALLY ANDERSON Parkinson’s Team Leader Northern Victor McConvey a specialist neurology nurse from Parkinson’s Victoria talked about sex with a presentation titled ‘Sexy Time – Conversations, tips and tricks on overcoming sexual difficulties in Parkinson’s’. He talked about the importance of carrying out a holistic assessment and the need to discuss sexual and intimacy
difficulties. Due to the challenge of dealing with the motor, non-motor or autonomic symptoms these questions are often omitted during consultation. He presented various tips and tricks to ensure ongoing intimacy. Members of the audience were reminded of the importance of remembering the relationship for what it is and not to focus on labelling it as partner/carer, but rather the husband/wife/partner relationship. Victor encouraged people to talk openly with their partner, to look at times when their medication ensured they were ‘’on’’ and to not rule out the need for more specific medications. The audience was reminded that it was often a good idea to discuss concerns with the family practitioner in case there was another underlying health issue. “I found the presentation useful as it’s an area we are often not comfortable to explore so it’s often neglected which may in turn mean people think that it is a ‘closed door’ or that they are the only ones having problems “ said Sally.
KAREN TREWICK Parkinson’s Community Educator, Hawkes Bay and Team Leader Central Professor Graham Kerr of the Institute of Health & Biomedical Innovation and School of Exercise & Nutrition Science, Queensland University of Technology talked about ‘What we know about exercise and Parkinson’s’. It was important to attend and learn about exercise and the important benefits it can have preventing falls and improving balance. Professor Kerr highlighted increasing evidence that aerobic and learning-based exercises could be neuroprotective in ageing individuals and those with neurodegenerative disease. Exercises that challenge our heart and lungs as well as our posture are best. He also explained exercise as important for maintaining balance, mobility and daily living activities. Exercise can improve gait, tremor, flexibility, grip strength and motor co-ordination. Exercises that require balance and the need to adjust parts of the body are also important for example dancing, yoga, marching to music with big arm swings and in sports like golf and tennis. Swimming is also good for the heart and increases muscle strength and may increase co-ordination. However, the resistance of the water increases the stiffness in some people and decreases it in others. “Exercise has assumed importance as an adjunct therapy because of its positive effect on many aspects of people’s health and wellbeing, as well as protecting against many disease-specific complications and this really interested me“ said Karen.
BELINDA BUTTERFIELD Parkinson’s Community Educator, West Coast The first guest speaker was inspirational and moving. Dr Gill Hicks MBE, FRSA is the founder of the London-based not-for-profit M.A.D for Peace. She was severely and permanently injured in the London bombings of 7th July 2005 and spoke of the day that changed her world and how she has taken a positive approach to life since. Gill Hicks lost both legs from below the knee and through this discovered a great inner strength, not only to fight for her life on that morning but to learn to walk again with the use of prosthetic legs. Gill actually crawled out from the mangled wreck with her own leg under her arm. A poignant moment was when she showed a clip of her removing and then reattaching her legs. Gill is extremely grateful to be alive and is a firm believer that we all have the strength and ability to make a significant difference. A mantra she lives by is ‘We can’t control certain events or dramatic change in life – but we CAN control how we react and respond’. Gill hopes to inspire others and gives inspirational talks to many organisations across the globe. She was named South Australia’s Australian of the year in 2015.
PHOTOBOOTH AT ADELAIDE CONFERENCE
Inspired to run Rachael Brand was living and working in Oslo when she contacted us to say she was running the Paris Marathon to raise money and awareness for Parkinson’s. Rachael was inspired by her mother Heather who lives with Parkinson’s. We asked Rachael a few questions to see what makes her tick! What inspires you? My mother inspires me with her mental strength and positivity; even though every day in her world is very different to the last. I was fortunate to see her compete in the Qatar Tennis Open in the 80’s and those images of her on the tennis court have always stuck in my mind. We have been living on opposite ends of the globe but I have just moved back to Auckland to take up a role as Director at Auckland Philharmonia Orchestra Connecting, which means I will get to spend much more time with her.
Why did you choose to run a marathon to raise money and awareness for Parkinson’s? I fell into long distance running quite by accident during a race at school at the age of 17. Since then I have run a few competitions. I love the mental preparation which is required for a marathon and I love to push myself physically. This is the first time I have actually used a marathon to create awareness and to fundraise for an organisation close to my heart. I have done charity work before, but have never done something like this and really felt it was time. I have already gained a lot of insight into how you can and should use such opportunities to fundraise for organisations that are dear to your heart. This may be the first time I fundraise for Parkinson’s NZ; but it will certainly not be the last.
What are the pitfalls and rewards for such a mammoth undertaking? The hardest part of my preparation was to push through several days of training in a row when your muscles are aching and telling you to stop. I’m also not a huge fan of the colder climate so running outside in snow; sleet and ice was a challenge. The reward was Moules Frites (mussels and chips) for my first meal after the marathon along with a glass of Chablis. The mussels are definitely not as good as green-lipped NZ ones, but it’s a wonderful dish which I just love and it reminds me of home! I must admit that Paris was an awful lot of fun; so much so that I’m already signed up for the next Auckland Marathon.
RACHAEL WITH HER WELL DESERVED SCHNEIDER ELECTRIC MARATHON DE PARIS MEDAL
Thank you for your generosity Rachael, we look forward to hearing about the next marathon!
Resources for Carers A number of excellent resources for carers as well as wider support are available from Parkinson’s New Zealand, Carers New Zealand, health professionals and other agencies.
PARKINSON’S NEW ZEALAND SUPPORT Parkinson’s New Zealand and our Parkinson’s Community Educator Service support carers throughout New Zealand. Our founders made sure that an integral part of our mission is to provide education, information and support to families and carers. They listen and advise and make referrals as needed. Our Parkinson’s Community Educators also connect carers with support groups. They may refer carers to a number of more formal support mechanisms, including recommending a counselling service or to the Needs Assessment and Service Coordination agency (NASC). PSNZ was a founding member of the Carers Alliance, which started 10 years ago.
GOVERNMENT SUPPORT SERVICES
Using NASC services is the first step for a person seeking Government-funded disability support services. Services may include help with personal support, meals, household management, carer support, day programmes, and respite support provided by rest homes and private hospitals. They are also a good source of information about other support agencies. Every carer should read the Government’s helpful Guide for Carers. It is a good place to start and has a lot of practical information about getting help. This resource has been updated by the Ministry of Social Development and other government agencies. It can be downloaded from www.msd.govt.nz or copies can also be requested by phoning Work and Income on 0800 559 009. The resource includes information about government funded services and supports available for carers such as financial help, NASC, help at home, respite, making and resolving complaints, equipment and modifications to your home.
CARERS NEW ZEALAND Carers New Zealand is an organisation especially for carers of people with a disability. They have recently completely revamped their website to help keep you informed about issues and developments important to carers, how to complete an emergency care plans, stay fit and well, and lots more. The Carers NZ website also has some new resources and information: Time Out is a respite planning guide that has some great ideas about proactively planning respite breaks and time out each day. The Meet Ups Tool Kit is designed to help organise fun get-togethers. They are also planning webinars and are interested in your ideas for upcoming webinar topics. There is also a questionnaire to help identify carers as often family don’t
recognise their role in the word ‘carer’ so don’t access the resources and support available. Carers can visit the Carers NZ website to download a free information pack, which contains the Guide for Carers, the latest issue of Family Care magazine and other useful information every carer should know about. Family Care is a quarterly magazine with helpful articles to help self-manage common caring issues at home. To request a free sample copy, phone Carers NZ’s National Carer Resource Centre on 0800 777 797 or email firstname.lastname@example.org Whether you’re new to caring, or have experience, these resources will provide helpful information. Caring can be challenging at times but there is support on hand to help and these resources can show you what support is available.
OTHER RESOURCES AND WEBSITES • www.parkinsons.org.nz/carers-and-families • Work and Income • Ministry of Health information on Respite Services and Carer Support
Parkinson’s and swallowing Eating and drinking are highly pleasurable experiences and most people enjoy them as part of social interaction. For many people in the later stages of Parkinson’s difficulties with swallowing can negatively impact on this pleasure. Learning about this can help reduce the loss of pleasure and the potential dangers associated with swallowing difficulties. The medical term used to describe a swallowing difficulty is ‘dysphagia, a swallowing disorder characterised by difficulty in oral preparation for the swallow or in moving material from the mouth to the stomach’. Although dysphagia may occur in the early stages of Parkinson’s, it mainly occurs in the later stages of the condition. This fact sheet explains the changes that can occur in the swallowing process in aging and Parkinson’s, and looks at the role of the speech-language therapist in the assessment and management of swallowing difficulties.
• Choking • Frequent need for repetitive swallowing to clear food • Frequent throat clearing • Coughing during or after swallowing • The need to ‘wash down’ food with drink • Mucus pooling in the mouth and/ or throat • Weight loss • Food avoidance
SWALLOWING CHANGES IN PARKINSON’S Many conditions can affect the way you swallow. As you age decreased saliva production and lessening of the ability to taste food can occur and the effects of some medications may influence your mouth dryness and swallowing. Dental changes may make chewing harder and make it less easy to feel where food is sitting in the mouth. See the February 2014 Parkinsonian Fact Sheet on ‘Parkinson’s and Dental Health’ for more information. People with Parkinson’s are particularly prone to swallowing difficulties.
COMPLICATIONS OF DYSPHAGIA Dysphagia in Parkinson’s will increase the chance of experiencing a silent aspiration. Silent aspiration occurs when food/drink enters the airway without eliciting a reflexive cough. Characteristic motor symptoms of Parkinson’s may also be evident in the jaw, tongue and throat muscles. In Parkinson’s, dysphagia causing aspiration (food or fluid entering the airway and lungs), is one of the leading causes of pneumonia (chest infection). People may have difficulties in making a tight lip seal, leading to drooling of saliva, food or drink during mealtimes. Moving the food from the front to the back of the mouth may also be difficult due to impaired co-ordination, making mealtimes longer. Swallowing may be slow to initiate, allowing food to enter the throat before the airway is protected. It may feel as though food, saliva or pills stick in the throat. Coughing or choking may occur during meals. People with Parkinson’s run the risk of reducing overall food intake. Inadequate food and drink intake can lead to muscle weakness, malnutrition and dehydration which negatively impacts on overall quality of life.
• Avoidance of social occasions involving food • Dehydration • Taking a long time to finish a meal • ‘Gurgly’ voice after eating • Difficulty chewing • Drooling of saliva • Persistent cough or chest infection that doesn’t recover in the usual timeframe • Hoarse voice or recurrent sore throat • Regurgitation of food. It is important to remember that identification of dysphagia can be difficult if you do not have a cough. This makes it very important to pay careful attention to less obvious signs of swallowing impairment. If you experience any of the above symptoms, speak to your doctor and Parkinson’s Community Educator and seek a referral to a speech-language therapist.
ROLE OF THE SPEECH - LANGUAGE THERAPIST As well as providing advice on speech, language and voice problems, speech-language therapists can also assess and help you manage dysphagia. An assessment of swallowing ability includes taking a detailed case history, and an assessment of the mouth and throat structures important for swallowing. Following this, some food and drink may be given to ascertain the safest consistency for the person. The three S’s for Management of swallowing difficulties.
SIGNS OF SWALLOWING DIFFICULTY Some signs of swallowing difficulties that you or a caregiver may notice can include: • Food sticking in the mouth or throat after swallowing • Swallowed food does not go down correctly – can back up into the nose
1. Safety – reduce risk for choking and aspiration of food and drinks 2. Sufficiency – ensure adequate oral intake 3. Satisfaction - with route of intake and quality of recommended diet.
FACT SHEET – CONTINUED FROM PREVIOUS PAGE
In order to achieve these goals, the speech-language therapist will work with you on manoeuvres or exercises to improve swallowing. In some cases, compensatory techniques may be introduced. These can include diet or environmental modification, such as taking smaller bites or eating in a distraction-free environment. Occasionally, alternative feeding methods may be necessary such as by a food tube.
• milk • mousse, custard, yoghurt, ice cream • souffle, omelette • casseroles • soup • fruit juice, pureed fruit
SUGGESTED FOOD A regular diet with a wide range of tastes and textures is important to keep all of your muscles working, and encourage proper nutrition and hydration. Only if you begin experiencing significant difficulty, would you need to adapt your diet. If you do notice that you are avoiding some foods, it is important to talk to a dietitian to ensure you are not altering your overall nutritional balance. For example avoiding meat can lead to insufficient protein intake. While each individual will have different challenges and therefore different solutions, the following suggestions may help • Food that is soft and moist, with a good flavour and smell, tends to be easier to swallow • Take care with foods which are hard, dry, crumbly or stringy. These may need lubrication or may be avoided. • Take care with mixed consistencies (e.g. solid plus liquid).
FOODS THAT MAY BE EASIER TO SWALLOW
• Be careful with foods which stick to the roof of the mouth or get caught around the mouth: dry mashed potatoes, tomato with skin on, biscuits, bran flakes, hard-boiled eggs. • Thicker fluids (e.g. nectars, milk shakes) may be easier to control and swallow than thin clear liquids, as they move more slowly.
• pancakes (with syrup etc.) • meals with sauces/ gravy • well cooked vegetables • banana If you are using more liquid meals, it is important to keep up your energy intake. Your dietician may recommend appropriate supplements and guidelines. You can make liquid foods thicker by using instant pudding, yoghurt, gelatine or instant potato powder.
ALTERNATIVE MEANS OF NUTRITION For some people, eating and drinking would not be enough to maintain adequate nutrition. Your physician may recommend an alternative feeding method to supplement oral intake.
PRECAUTIONS IN PREVENTING ASPIRATION OR CHEST INFECTIONS There are some good practices which may help to reduce the risk of aspiration: • For those on medication for Parkinson’s, time mealtimes during the ‘on’ phase of the medication
• Keep food presentation appetising: flavour, smell and appearance of food.
• As far as possible maintain an upright position during mealtimes
• Relax and enjoy your food. It is good to have a break between mouthfuls and take sips of water during the meal. This will not only help you relax but also allow you to clear your throat and mouth. You may need to swallow twice to clear each mouthful.
• Do not tilt head backwards during eating/drinking as this makes it harder to swallow
• Eat smaller portions more frequently, especially if time for meals is limited
• Supervise meals and keep distractions to minimum during mealtimes
• If modified food/drinks are prescribed, eat only the diet/ fluid consistencies that have been recommended • Use recommended compensatory techniques
• Diet fortification may be useful such as a supplement drink like Complan or Ensure. This provides a large amount of protein in a small volume.
• Pay extra care to dental and oral hygiene by regular brushing, flossing and dental review. This prevents bugs in the mouth causing chest infections.
• Take pills one at a time and with food or fluid the consistency of puree or yoghurt. This travels at the same speed as the pill rather than water which can race ahead.
• Treat reflux if present with blockers such as Gaviscon
• Consider reformulating some of your medicines to liquid or crushable forms (talk to your GP and pharmacist)
POSSIBLE PROBLEM FOODS • mixed textures, like liquid with bits in (e.g. minestrone soup or watery mince); • flakey biscuits; • hard toast or nuts, chocolate, grains, seeds; • stringy, fibrous vegetables
If you are experiencing any of the swallowing difficulties described above, or are concerned about someone you are caring for, you should seek a referral to a Speech-Language Therapist. In New Zealand, self referral to a therapist is possible via your primary care physician, Parkinson’s Community Educator or the local district health board. Revised Dr Jacqui Allen, FRACS ORL HNS & Dr A Miles, PhD Acknowledging the original author Maggie-Lee Huckabee, Ph.D. Last reviewed: August 2016 Please do not interpret anything in this fact sheet as personal medical advice, always check any medical problem with your Doctor. Further information may be obtained from your Parkinson’s Community Educator.
NEWS FROM AROUND THE COUNTRY Up and down the country people ran information stands, street appeals, seminars and took part in newspaper articles to help raise awareness of living with Parkinson’s and of the work of Parkinson’s New Zealand. World Parkinson’s Day was a particular focus for many of our regions. Here is just a selection of what our wonderful volunteers and members have been up to.
CHAIRPERSON JAN GRIGG FROM PARKINON’S CENTRAL PLATEAU DIVISION RECEIVES Z FUNDING
CHRIS HINTON HOLDING HIS AWARD
Z’S GOOD IN THE HOOD A number of Parkinson’s divisions recently received funding from Z service station’s “Good in the Hood” promotion. Customers that buy petrol are given a token to ‘vote’ for one of four charities. The nominated charities then get a proportional share of $5,000 depending on how many votes were cast for them. Thanks Z!
TARANAKI Congratulations to Chris Hinton who recently received a Citizens Award at the New Plymouth District Citizens Awards. Chris was recognised for the many hundreds of volunteer hours that he has given to the district, including serving for 16 years as the Treasurer for Parkinson’s Taranaki. Thank you Chris!
AUCKLAND Every year Parkinson’s Auckland raises funds by selling tulip bulbs to its members and the public. Thank you to our wonderful
volunteers who sold 1400 packets again this year. Auckland is going to be looking beautiful this spring!
WAIKATO Parkinson’s Waikato runs quarterly presentation’s for members. In August clinical nurse specialist Dianne Ogle discussed how the bladder works in general and then the specifics of how Parkinson’s can affect it, concluding with where assistance can be sought. Dianne was an engaging speaker who enlightened members in an informative and light hearted way.
KAPITI/HOROWHENUA Parkinson’s Kapiti Horowhenua recently held a movie night fundraiser. The evening kicked off with nibbles and then the attendees enjoyed “Learning to Drive”, a brand new romantic comedy based on a true story. There was also a small raffle. Parkinson’s Kapiti Horowhenua raised $540 and enjoyed a fun movie night!
Remembering Parkinson’s in your Will Parkinson’s New Zealand recently became a member of the ‘Include A Charity’ campaign to raise awareness about the how everyone can remember charities they hold dear in their Wills. We all have different ways we want to leave our mark on the world and leaving a gift in your Will is one option for you to consider. A lot of the work we do at Parkinson’s has happened because generous people have left us a gift in their Wills. The good news is that it can be a really simple process. Whoever you are, whatever your situation, you can help make a difference and help create a better world. Gifts come in all shapes and sizes and don’t have to impact on your current situation or support of your family.
To create a new Will or update your existing Will to include Parkinson’s we would advise that you consult your lawyer or if you do not have a lawyer contact the New Zealand Law Society (04) 472 7837, www.lawsociety.org.nz, or Citizens Advice Bureau 0800 367 222, www.cab.org.nz. We recommend you keep your family informed of your intentions. We would also greatly appreciate knowing of your plans so that we can thank you for your support. If you still have questions or would like to discuss a gift to Parkinson’s please feel free to contact Natasha McDougall on 04 472-2796 or email@example.com. Website www.parkinsons.org.nz/bequests
PARKINSON’S AWARENESS WEEK 2015
Connecting People, Changing Lives Every year from 1 to 7 November Parkinson’s New Zealand raises awareness and money during National Parkinson’s Awareness Week. This year our theme is Parkinson’s New Zealand: Connecting People, Changing Lives. At Parkinson’s New Zealand we know connection is important for wellbeing. We connect people to services in their community and organisations across New Zealand. We help connect people with Parkinson’s and their carers to support groups, exercise groups and social events as well as health services and referrals. We connect our staff and volunteers to great training and resources, new treatments and research information and to other neurological organisations and health networks. We know these connections change people’s lives.
IN THE MOVIES This year Parkinson’s New Zealand was chosen to be the recipient charity of the Val Morgan Young Lions Competition. Over 20 teams of young people in the advertising industry were challenged to create either a film or media campaign for Parkinson’s Awareness. The winning entry is based on a very familiar Head Shoulders, Knees and Toes Nursery Rhyme. The message being that when you have Parkinson’s the brain and body don’t always connect. 12
Val Morgan is going to show this film throughout the country through their cinema networks which provides Parkinson’s with a public visibility windfall. Look out for it in your local cinema.
GET INVOLVED We want New Zealand to take up the challenge and connect with new people or a new community to raise awareness for Parkinson’s in New Zealand. To keep up with what’s happening keep an eye out for updates from your local division and at www.parkinsons.org. nz or follow us Facebook www.facebook/parkinsonsnz or Twitter: @parkinsonsnz.
VOLUNTEERS NEEDED We need as many people as we can muster on the streets or at events collecting for Parkinson’s during our Awareness Week. If you or members of your family can lend a hand please contact your local branch or division. If you can’t volunteer on the day there are many other ways you could help us, for example putting posters up in your local doctors, libraries and supermarkets. You could also hold a morning tea or get together in your neighbourhood for a gold coin donation. All branch and division contact details are on our website or email us at firstname.lastname@example.org or call 0800 473 4636 for more information.
Published on Sep 3, 2015